World Cancer Day

It's Saturday 4th February ....apparently World Cancer Day. Who knew? For us everyday is Cancer Day, for us everyday is living with the emotional, financial, psychological & physical effects of cancer. It's a bugger! It's horrid! It's nasty! It's scary! It's devastating! It's bloody inconvenient! It's detestable! At the moment , our own particular cancer is being rather aggressive and growing very quickly, a bit too quickly for us. And , I think , even surprising our consultants too, with it's stealth.

Not content with it's contained space within Scott's face it's decided to grow up around his eye and is now in his line of vision ...a kind of ' here I am!' . We had a saved up for, trick up our sleeves of radiotherapy. Held in reserve. In case of emergency break here. For use later. A last hurrah!

On Tuesday ( whilst I was having my minor mini meltdown) we had 5 appointments at Peter Mac, one after the other after the other . There were tears, snots, smiles, laughs, hugs , more tears, much honesty, more tears but I think we ended on a smile. First appointment was with our nutritionist...did you have a nice holiday ?  I asked. How did you know I was on holiday ? she countered ...er ..you're all tanned ....and your colleague told us you were on holiday  last week! Not really stalking, just being polite! Scott is eating and drinking okay so not really a terrible important part of our day (though we do know that nutrition is very important in cancer care , just not our most pressing issue)

Then it was time to see Ben, our lovely oncologist, who always walks out to the waiting room to greet us, who is always gentle in his manner and kind in his ways but brutally honest in his words....but done in a nice, kind, gentle manner! He looked shocked at the visible increase in size of Scott's tumour.....and mentioned the ' in emergency , break glass' time might be now rather than later.
We also discussed our Advanced Care Directive...not for the faint hearted or emotionally unstable. I spoke with my high pitched crying voice ( the one which freezes when it has something important to say) ...he now patiently waits and Scott pushes the tissues nearer me. We have a familiar routine. I'm glad he never rolls his eyes and says in an out loud voice, bloody hell , here she goes again! He
answers my question gently and honestly.


Then it was time to go to see our Pain Specialist doctor. She has been amazing. She is also very kind and gentle and determined that Scott shall not be in pain and if he is that we can quickly solve it. She has repeatedly called us at home and whilst we were in Tasmania to check how Scott is. When Scott was in hospital recently , she resolved a mini pain crisis for him and then came back and sat with me for 30 minutes, chatting , comforting, laughing whilst Scott, now pain free, slept. She , personally, has made such a difference to our lives. She is an amazing doctor and wonderful , kind human being.
Sadly for us this was our last appoinement with her as she is moving on to be kind and compassionate with other patients. This was the huggy part of our day. I left with tears in my eyes and left her with tears in hers.

Then , it was time to go and meet with another lovely person , our Radiation Oncologist. We've known him almost 5 years now and he is such a gentle, kind and clever man . However, when your
oncologist puts his head in his hands when he sees your husband's face, that's never a good sign. We were there to discuss radiotherapy as a further down the line topic. His words were "I don't think I actually have anything positive I can say to you both." Sob! However, after a discussion, another look at scans, a consultation with another senior oncologist we are breaking the glass now and Scott will start , what is known as 'Quad Shot' radiotherapy this coming week. We are hopeful that it will shrink the growth of tumour around Scott's eye and stop it further encroaching on his vision. That is all it will do. It won't cure cancer, it won't make it all better...it will just , if we are lucky , reduce swelling.

Finally, it was time to traipse around to our Head and Neck Cancer team social worker for a catch up. I have counselling sessions with her. I cry, she says it's okay to cry, I cry again, we laugh. She offers wise words, ( sometimes  I take no heed of them but sometimes they make sense) , I cry some more, I speak in my high pitched voice, I bemoan the fact I'm an unattractive crier and then I feel better after having chatted. She has , wonderfully, liaised with Centrelink, a government agency , and spoken to people I wouldn't have been given access to and finally our application for a carers allowance has
been agreed and backdated  after it was declined as apparently Scott wasn't terminally ill enough.

We had to return back to Peter Mac on Wednesday afternoon, which at that point had been our only appointment free day. We are now attending appointments in the basement level where radiotherapy lives.
Scott had to have another CT scan and be fitted for his face mask. This mask is screwed into the table and Scott is fixed there as his treatment is carried out. He found this much more difficult than it was first time round ( Scott had 6 weeks of daily, aggressive radiotherapy in 2012) as he has had further surgery and reconstruction of his mouth since then and this tumour is pushing his mouth from the inside. He has a little breathing tube in his mouth. He is very brave...each patient has their own , individually made mask. Some people  keep them as a memento.

Yesterday , our Radiation  oncologist called me to tell me he's found , on the CT scans , a fairly large malignant area on the opposite side ...did we give permission for it to be zapped as well. Sigh! Yes, of course. So we were feeling rather deflated last night.

So , on World Cancer Day, I give my thanks to everybody involved in our care, from the volunteers who run the library, to the research scientists, to the Pet Therapists, to the oncologists, to the nurses, to the admin staff, to the cleaning staff and every single one of you in between..
You make a difference to us.

Check out your lumps and bumps.
If it's not right...it might actually be not right, so get it checked out.

Love like you've never loved before. Roar like a bull with laughter. Live like it's worth living for.

( and to my lovely friend who asked where skinny Mhaggie had gone...I ate her! )

#worldcancerday

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